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August 30, 2016

Pain Rehabilitation Puts Brent and Nancy Berry Back in the Saddle

By SharingMayoClinic

During the holidays last year, Nancy and Brent Berry of Danbury, Iowa, went on a train ride with their children and grandchildren, after a two-hour car ride to get there. They’ve been horseback riding with friends. They’re laughing, running errands together, and hosting their grandchildren for overnight stays.

Not long ago, they couldn't enjoy any of those activities. Pain affected every aspect of their lives.

Brent quit his job several years ago due to medical disability. He has several chronic medical conditions, including inflammatory arthritis and chronic fatigue. He took prescription opioid and benzodiazepine medications for pain and sleep problems. He slept a lot.

Then Nancy got sick from the West Nile virus, caused by a mosquito bite. Her muscles swelled, her joints felt hot, and she had severe fatigue and pain.

"I was unable to do my normal activities," she says "I was in a downward spiral into chronic pain, and everything that goes with it — anxiety and depression. I felt like I was losing my life." The Berry's turned to the Pain Rehabilitation Center at Mayo Clinic as what seemed like a last resort. Through the program, they found a new way to approach their conditions, along with renewed hope for the future.

A beacon of hope

After Nancy was diagnosed with fibromyalgia, her family physician prescribed narcotic pain medication, muscle relaxers and a sedative for anxiety.

"My existence became about going to work, coming home and going to sleep," she says. "I cried at work and at home. Household chores didn’t get done. I didn't want to see friends, go outside or ride our horses. Our kids were worried about my depression and drug use. I didn't like what I was becoming."

Her husband was in a similar boat. "He'd get up around 9 a.m. and was back in bed by 11," Nancy says. "He'd eat something, take pain medication, and then sleep all afternoon. He fell asleep after supper."

Nancy learned about the Pain Rehabilitation Center at Mayo Clinic's Rochester campus — about four hours away from their home — and called to get in. "I thought I’d give it a try," she says. "What did I have to lose?"

The program, one of only a handful like it in the country, had three-month wait-list.

“They’re 100 percent committed to our mental, physical and spiritual health, and are the most wonderful group of people you’ll meet. They truly believe what they’re teaching.” – Nancy Berry

Mayo Clinic's Pain Rehabilitation Center has a 17-day outpatient program to help adults with chronic pain return to an active lifestyle. The program also has a two-day option for adults and a pediatric program for ages 12 to young adult. The Pain Rehabilitation Center at Mayo Clinic's Rochester campus treats about 400 patients per year. Mayo Clinic's Florida campus also has a Pain Rehabilitation Center, and Mayo Clinic's Arizona campus launched a Pain Rehabilitation Center in June 2016.

The most common diagnoses for those who participate in the program are back pain, headache, fibromyalgia and abdominal pain. Typically, patients have tried other ways to manage their pain, including medication, surgery and physical therapy, without improvement in their function or pain level. They've often restricted their lifestyle and lost strength to the point that even daily activities cause pain.

The program emphasizes discontinuing pain and sleep medication and focuses on self-managing chronic pain. Participants regain strength and stamina with the support of staff and peers in the program.

"Managing chronic pain requires an active, consistent approach to help people cope more effectively," says Susan King, a nurse at the Pain Rehabilitation Center. "Patients tell us they just want to get their lives back. Some of them haven't gotten out of bed for a long time."

A turning point for Nancy

Nancy stayed at a campground near Rochester and drove to the Pain Rehabilitation Center every day during her time in the program. She was one of about 30 participants — each at a different stage of the 17-day program. She participated in group therapy, physical and occupational therapy, and other group and individual sessions.

"Over the course of the program, we learned about chronic pain and the effect it has had on our lives, and how to cope with pain to live a more productive life," Nancy says. "We learned techniques for breathing, meditation, exercise, sleep and distraction, and how to retrain our brains."

About five or six days into the program, she says she started to see a change in herself.

"My new normal is happy rather than focused on my pain. I look forward to living my life again." – Brent Berry

"I started to figure out what I was learning. I became more positive and began to look at the brighter side of life," she says. "Each of us had a nurse coordinator to monitor us while we tapered off of medication. I went through mild withdrawal symptoms for a few days. It was unpleasant — like the worst hangover ever — but I got through it. We learned that Mayo Clinic research shows that opioids and benzos (benzodiazepine medications) don’t help with chronic pain."

About 50 percent of patients are on opioid pain medications when they enter the program, according to Wesley Gilliam, Ph.D., clinical director of the Adult Pain Rehabilitation Center program, and almost all patients are on some types of medications.

"Chronic pain is very difficult to treat, and the medical community is taking a hard look at how to do it differently — with less dependency on opioids for treatment," says Susan King.

Nancy says the program’s staff was truly concerned about participants' well-being. "They're 100 percent committed to our mental, physical and spiritual health and are the most wonderful group of people you’ll meet. They truly believe what they’re teaching, and it shows."

Brent’s turn to find a new normal

When Nancy thought about returning home with her new outlook and skills, she was anxious. "I was excited to live a more normal life and practice the skills I’d learned but knew it would be difficult for me to live with Brent, who was still in the chronic pain cycle, with depression and anxiety," she says.

Family members can visit program participants on certain days to learn about chronic pain management and their loved ones' journey. Nancy felt that Brent needed to go through the program, too, and discussed the need with her counselors.

"Brent was skeptical at first but then saw how much better I was," she says. "He agreed to an evaluation while he was in Rochester, and the staff helped to get him in more quickly than he'd have been able to otherwise. I was overjoyed when he was accepted into the program."

Brent says the program has made a huge difference in his life as well.

"Every aspect of life is better when you have a more positive outlook," he says. "My new normal is happy rather than focused on my pain. I look forward to living my life again. No matter how bad I feel in the morning, I get up and get dressed, and do as much as I can.”

Brent is up by 5:30 a.m. and now stays up all day. He and Nancy now go to a medically oriented gym and practice the exercises they learned at Mayo Clinic. Both continue the physical therapy programs recommended at Mayo Clinic.

"We support each other, discuss what we should be doing and remind each other that we can do this together," Nancy says. "We keep in touch with the people we went through the program with. They're part of our support system."

Nancy and Brent say their grown children have noticed the changes in them, too. "They invite us to more activities, so we're more involved now," Nancy says. "They can see that we're a lot happier. We're doing more with our friends and riding our horses again. We don't take any of this for granted."

'You can do it'

Participants can return to the program's one-day after-care component as often as needed. Both Nancy and Brent have been back for after-care.

Nancy says she recommends the Pain Rehabilitation Center to anyone with chronic pain who wants to get their life back. Her advice: "Have an open mind, and try to learn as much as you can from the program. It will change your life for the better."

Brent agrees the program has been life-changing. "It’s unbelievable. You probably will not find a better program anywhere in the country," he says. "There were people who came into the program with walkers and wheelchairs and went home without them. If you truly want to change your life and are willing to put in the effort, you can do it."

this reminds me of my husband and I. I have been to Mayo Clinic years ago and was diagnosed with Fibromyalgia but was unable to stay for the education and treatment. My husband has back pain that seems to have no treatment. This gives me hope that we both might be treated.

One year ago, I went to the Mayo thinking I needed an organ transplant. I was in so much pain that for a decade (since I was 9 years old) I took narcotics daily, missed a ton of school, and ended up dropping out of my sophomore year of college. When I finally got in to see a doctor, he told me that I not only didn't need a transplant, but I could deal with the chronic pain I was experiencing by going to the Pain Rehabilitation program in Rochester.

The premise is that people who experience chronic pain, fatigue, nausea, and certain other symptoms who show signs of Central Sensitization can be rehabilitated by rewiring their brains to stop overreacting to pain signals. It's a long and difficult process, because the way you treat Central Sensitization is by experiencing the pain, and working through and past it. It's counter-intuitive, but it works.

These people literally saved my life. I am 20 years old and I was in literal hell for 10 years before coming to the Mayo. I did the children's' program (I was 19 at the time, but they were nice and took me in anyway) and I was there for around a month and a half, and by the time I left, I was completely off the narcotics I had been taking daily.
I saw 2 different people who had been wheelchair-bound for years with POTS learn to walk again. I saw a girl who only could eat through a PICC line and had been told she had 2-5 years to live and was already saving up money for her own funeral learn that she would have a long and healthy life. I made this account just to post this comment while I should be studying for my Anatomy II exam tomorrow – I'm now studying to be a nurse, partially because of the people who helped me through this program – because I want people to know how amazing this program is. They even offer scholarships if you can't afford it. You should ABSOLUTELY look into this, even if you're not sure you're a candidate.

I want other people like me to learn what it's like to have a normal life. These people save lives.

I heard a podcast and went on to Google Chronic Fatigue Syndrome and here I am, on the Mayo Clinic site and posting in response to this article. I feel like I have stumbled into a group that is related to my experiences with pain and chronic conditions. I went through the stress of divorce (not very gracefully, I must add) and developed shingles in the midst of it all. my shingles lingered for over a year as Post-Herpetic Neuropathy (spelling?). The nerve involved in my case touched my bladder and colon, so that each time I had a flare-up, I had overactive symptoms in both areas that made any kind of activity difficult and working became a challenge. As I went to different doctors to determine that specific body systems were not diseased, I tried to just "get up and Go". I was such and active person, but I found myself sitting/sleeping on the couch A LOT! Not because I wanted to, but because it just was too tiring to do anything. A flare-up would last 7-8 days and medicines made symptoms controllable, but when I was finally ready to get up, I had let all my chores and responsibilities go. This caused me to jump in and try and tackle them all, only to make me tired once again and head to the couch for another nap. I find that family and friends want to help (and do), but just don't understand why I don't just "Get over it!" This can leave me feeling down and flawed, because I also want to get over it as well. It is frustrating to no end. I was on Lyrica and have now weaned myself off it…for the most part. It made me gain weight and my joints began to hurt to no end. sometimes I feel a million years old. My 80 year old dad is so much more active then I am. When I do start walking again, I find I hurt my knees and my hip (involved in the shingles) pops in and out. A great physical therapist helped (much more than any doctor I have seen) and I bought a good bike. What I am now struggling with is that periods of focused mental/physical activity (such as a home project or change at work) causes my body to experience STRESS. This stress (some of which I welcome and find to be a positive) seems to cause a flare-up. Flare-ups start with over-active bladder, then IBS, and lead my back to LYRICA. They only last a couple of days, and the following fatigue is shorter too, but I don't know what to do to avoid this physical response to the regular rigors of life. Any suggestions? I love meditation, and think mindfulness is very helpful to me. But, when I have an episode, I find my mind going back to a preoccupation with this stuff. I so tired of this cycle. Is there a realistic hope that it will all be behind me some day?

Thank you for writing. Unfortunately, we cannot diagnose conditions, provide second opinions or make specific treatment recommendations through this website. If you would like to seek help from Mayo Clinic, please call one of our appointment offices (Arizona: 480-301-1735 Florida: 904-953-0853 Minnesota: 507-284-2511) or visit https://www.mayoclinic.org/appointments.

You might also consider looking into our Mayo Clinic Connect website (http://connect.mayoclinic.org), where you can communicate with others who may have had similar experiences. You can also read Mayo Clinic expert blogs and take part in educational events.